Research study: transition readiness of youth with Sickle Cell Disease

We are the SMART Youth or Sickle Cell Disease Management, Advocacy and Resources for Transitioning Youth. We are a group of Translational Research students at the University of Toronto conducting research to support youth with Sickle Cell Disease to become transition ready.

WHAT ARE WE DOING?

FRAME

Identify the scope and needs of transitioning youth with SCD

CO-DESIGN

Collaborate with youth, families and caregivers, and healthcare providers

ITERATE

Continue to seek feedback from partners to improve our project

TRANSLATE

Develop an intervention based on specific problems and needs

Patient Story.mp4

WHY ARE WE DOING THIS RESEARCH?

Patients with Sickle Cell Disease (SCD) often experience excruciating pain due to red blood cells taking on a sticky sickle cell shape and clumping together, which blocks oxygen flow throughout the body. Supports are mostly available for pediatric patients; however, those resources are often gone once they reach adulthood. As a result, youth with SCD have often reported feeling unprepared to manage and self-advocate for their health. Our goal is to co-develop an intervention with youth with SCD to support their transition from pediatric to adult care.

WHO ARE WE?

Fairuz Karim

Geil Astorga

Janine Noorloos

Jaspreet Randhawa

Peola Ellis

We are students of the Master of Health Science in Translational Research in the Health Sciences, Department of Laboratory Medicine and Pathobiology, Temerty Faculty of Medicine at the University of Toronto. We started working together in September 2021 as part of a course module. We have continued pursuing our interest in helping youth with Sickle Cell Disease and built partnerships along the way, including the Sickle Cell Awareness Group of Ontario.